Hi! Who are the ten people who visit this site every day? I was really surprised to see my blog still gets views, despite being super inactive this year.
I’m sitting here with an everything bagel and glass of water, thinking about how fitting it is to have such an unappetizing pair for breakfast. I feel like, as a writer, I should embellish and talk about drinking something more beautiful like a hot cup of coffee — water just doesn’t sound as poetic as the power couple of coffee and a bagel. It’s very 2020 to just be real and not try to make things seem better than they are. This was a very real year, and I have appreciated all the honesty we’ve seen.
2020 has clearly been super weird, with lots of highs and lows. As someone who does have a chronic illness to monitor, I have been conservative with COVID stuff, following the CDC’s guidelines, and embracing *~social distancing~* for what it is. I’ve acquired new hobbies at home, and decided that since cooking and eating go hand in hand, I want to be the best darn cook possible. I even mastered risotto last week, which was a major pain in the butt the first time I tried it.
Let me catch you up to date on where I am now. This year has been busy, despite spending it at home. We sold our house recently, and are full force shopping for a new home. Our dog, Jax, recently had surgery to remove what we now know is a stage 2 low grade mast cell tumor. I seem to have sympathy pains for Jax, as my Eustachian tube is blocked (seriously, tell me how to unclog a blocked Eustachian tube because it is driving me up a wall!) and just won’t go away. Jax has my heart and I would do anything for that pup. I am moving forward now and just doing all the practical things that need to be done for a dog with an issue like this. It’s funny how I can handle my own health problems better than my dog’s, but anyone who has had a pet understands I’m sure.
I turned 30 this year, and despite always saying that I didn’t think 30 seemed old, it feels weird. I can’t write about how I’m a “twentysomething” anymore, and it does feel like a new stage in life. Part of that is probably the nature of laying low this year, though.
2020 was hard, but I am grateful for health of myself and loved ones. Life becomes a lot simpler when you know what it’s like to lose something as basic as your health. It makes it easier to be thankful for little things, and not sweat the small stuff. There is a light at the end of the tunnel, even if it’s still a little ways away, and one day we’re going to remember some of the fonder memories from this year. We’ll remember trying new things to entertain ourselves at home, lots of quality time with a select few loved ones, why it’s important to cherish every moment we have on earth, and finally, that 2020 was the year of figuring out the secret to the perfect banana bread.
I usually do a “word of the year,” along with some small resolutions, but this year I am going to skip doing anything, and continue to take each day as it comes at me. Happy new year, and let’s hope that despite Netflix taking The Office away from us, we can make the most of our circumstances this year. I’m going to go make some coffee now, because it’s all I’ve been able to think about after rambling about my glass of water earlier.
It’s weird seeing some of the parallels from my life when I suddenly got sick with a chronic, debilitating illness and the pandemic. People are describing emotions that the COVID-19 quarantine is bringing out that I felt when I suddenly got sick six years ago. I’ve been handling each step of the way a little better than you would expect from someone who does deal with anxiety, but after thinking about it a little, I attribute a lot of that to having experienced something that was, emotionally, kind of similar. Chronically ill people were prepared for this in a way that the regular population maybe wasn’t as much. Here are some thoughts I’ve had, both in isolating at home now, and back when I first got sick.
What would my life look like if it wasn’t for health concerns?
Back in the day I thought about this a lot because I was forced to give up my dream of continuing to work at my dream job. I had just completed the greatest internship of all time at Seventeen magazine in New York City, and was so excited to find a cozy (some might call it cramped) apartment to move to permanently. Instead of continuing on a normal path, though, I began fighting to have any taste of normalcy I could get. I got incredibly sick overnight and suddenly went from being a healthy 22-year-old to not being able to sit or stand without feeling dizzy or passing out. I was couch bound with the exception of going to the cardiologist or physical therapy to figure out how to begin my road to recovery.
Now I sometimes think about what the world would be like without all the corona craziness that’s going on. I would be able to see all of my friends and family, I would be able to go on normal date nights, and I would be able to continue to explore the world. I try to feel content being at home and remind myself how blessed I am to have my health and a few loved ones here with me. This time around, I’m just home bound — not tethered to the couch because of a lack of health. I’m trying to appreciate the fact that I am healthy during the pandemic, push myself to do yoga in the basement, and realize that things could be a whole lot worse. Not having a working body makes you feel so much more trapped than a comfortable home filled with food and an Internet connection.
This isn’t fair.
No, it’s not. I’ve learned a lot of things in life aren’t fair. It wasn’t fair that I had secured my dream job, only to be hit over the head with an illness that knocked me on my butt. I was angry because I had always taken good care of myself. I ran several days a week, played intramural sports throughout college, and ate well despite having a good enough metabolism not to. I never drank excessively and wasn’t really risky with anything that had to do with my health. I didn’t pay a crazy amount of attention to it because I didn’t have to, but I actually did a good job maintaining a very healthy lifestyle. I felt so frustrated that I had done everything right and ended up being the one person I knew who had a crazy, weird health problem happen to them. It didn’t feel real, but being sick was my new reality.
We need to have a new normal with the reality of the coronavirus pandemic. It sucks not being able to do our favorite activities or see friends and family, but taking up new hobbies and finding the bright side of things is so important for our mental health.
Having a chronic illness made me realize that even though there may be unfair things that happen to you that suck, there is always something to be joyful for. Back then I got to spend quality time with friends and family. I learned that I am a lot tougher than I ever thought, and I learned that I need to be thankful for every single thing I am able to do, because some people aren’t as lucky as me. I am also convinced that I would have never met my husband, had I not gotten sick with POTS. The only reason I wasn’t in New York was because I had to stay in the area, and who knows what my life would look like now if I had been there instead. These are all blessings that came from the hardest thing that ever happened to me.
When will this end?
When I got sick with POTS I was told so many different things. “This is your life now, you’re not getting better” was the first thing a nurse told me. Later I was reassured that a majority of people who get POTS when they are young get a whole lot better in time. Since POTS hasn’t been studied as long as other illnesses, there weren’t always answers to my questions, but luckily through lots of physical therapy, lifestyle changes, and time, I’ve made leaps and bounds and know how to manage my health. I have far, far less bad days than good ones now.
It’s absolutely devastating having your life turn upside down and your routine completely trashed. Anyone with a chronic illness will tell you this. We’ll also be there to reassure you, though, that just because things change drastically doesn’t mean they’re forever — but perhaps more important, it doesn’t mean you won’t have joy in your life or that you’re doomed to feeling the way you do today. People are adaptable and learn to adjust to their circumstances. If you had told me everything I was about to go through right before I got sick, I would have had an absolute meltdown. I wouldn’t have been able to deal with knowing I wouldn’t be able to merely stand up without passing out, but you know what? I got through it. I somehow managed being genuinely happy the years I couldn’t even stand up or have a single normal day. Did I mention during this time I couldn’t go to restaurants, I couldn’t shop for my own groceries, and I even had to be taken home from the movie theater because the room was violently spinning around me, just from sitting upright? Do you see a few parallels between being chronically ill and being stuck at home because of COVID-19? The biggest difference for me is the fact that this time around I can actually move around and be more active, and don’t feel sick all the freaking time.
Take it one day at a time.
The easiest way to do anything difficult is take it one day at a time. When I got sick, I didn’t let myself think about what it would be like in one, five, or ten years if I still couldn’t get out of the house and do anything. Instead, I found things to look forward to every day, even if it was just a little TV show or eating one of my favorite foods. Now, under the stay-at-home order, I don’t think about how long it will be until I can see family and friends or go out to a restaurant again. I look for other things to occupy my mind, rather than spiraling about things I have no control over. This is so much easier said than done and if you slip up you need to be gentle with yourself, but there’s no shame in asking for help if you need it. Therapy can be an amazing way to help control anxiety, and even in these strange times people are doing sessions online or over the phone. Learning to be present and appreciate what you do have can be really hard in the face of adversity, but it’s the most rewarding thing you can learn how to do.
It’s okay to miss your old life.
Just don’t make it out to be something it wasn’t. I had to remind myself that even though I lost a working body, life hadn’t been all sunshine and rainbows before I got sick. I loved to run, but going for ten miles at a time was not a walk in the park. My lungs hurt, my legs burned, and I have always gotten bad shin splints from running. Now that I can’t, I often think about how much I loved it, but running isn’t always easy. Our lives in this weird little quarantine bubble have some bright spots we’ll miss. Whether it’s having your family at home with you, being able to binge on all the reality TV you didn’t have time to watch before, or being able to work in your pajamas, there are things that are good about the present time. We miss so much that we used to do on a regular basis or took for granted, but one day we’ll be back to our normal lives and look back at this as a little blip in our lives.
It’s also okay to be scared.
Losing every sense of normalcy is freaking hard. Find things to look forward to in your new life, and remember that so much of this is temporary. The pandemic isn’t going to last forever, and one day we will be out doing our own grocery shopping and going into work again. It’s so weird that we are all facing this uncertainty at once, but none of us are truly alone, and I think just about everyone has had a pit in their stomach at one point or another about how this is affecting each and every one of us. It’s normal to feel uncomfortable about something as big as this, but doing your best to focus on what you can control — and letting go of the things you can’t — does make the weight feel a little less of a burden.
And finally, circumstances change.
I am so thankful to have the health I do today. I get frustrated and angry when I try to go for a run and my heart can’t handle it, but I am so lucky to be able to go for walks without feeling dizzy, type on my computer without having terrible muscle pain, and I can cook now without worrying about my elbows or arms hurting — even if there is a lot of stirring involved. Things are constantly changing, and it is no different for the pandemic. Incredible minds are working to find solutions to this every single day, and I am confident that people are going to find ways for our lives to slowly gain a sense of normalcy.
I honestly don’t remember a lot of what life before chronic illness was like, in the sense that it’s difficult for me to feel like POTS was ever not here. I have to do a lot to manage my symptoms now, but everything has become such habit at this point that it doesn’t feel weird putting little electrolyte and sodium tablets in my water every time I go out to eat and I’m used to doing nerve glides and mobility work at the first sign of stiffness. This all feels so normal to me, so even if we do have some things that become a new normal, we’ll adjust. People are much more resilient and adaptable than we give ourselves credit for. I am not particularly strong or tough, and I really don’t like change. If I can go through years of being sick and dealing with a million changes, absolutely anyone can. We may not all be in the same boat, but we are all in this together, and don’t ever hesitate to reach out to others if you need help. Many people are looking for ways to help others, but just don’t know how.
You know what bugs me? People who remember things well.
I know, I’m just being an enormous jerk because, as you may have seen on my SnapChat or Instagram story yesterday, I have the worst memory of all time. Like, possibly the worst. I’m trying to be proactive by fixing it, and restudying some good old elementary school history and geography, though — including perfecting the map of the United States by not getting Arizona confused for Nebraska. Yes, that happened.
Anyway, part of being like this includes a very strange confusion about how long we’ve been doing this. I actually don’t remember what day I started staying inside, but I know by March 10 I didn’t go out to eat and was hesitant about being anywhere fun because I had a bad feeling about what was coming. This was a date friends were still saying that the media was freaking out about nothing, and that the Coronavirus was “less deadly than the flu.” It’s funny how there can be a narrative that starts, just because one person starts saying it, then more and more people pass it along until it seems to be the cold, hard truth.
Last night my anxiety spiked again. Not because I’m having a hard time personally being inside — I keep reminding myself this is just a season and to make the most of it — but more so because I’m feeling on edge for all of my loved ones. I hope they’re all doing okay and aren’t scared or having a hard time. Today I’m feeling a bit better, but am still on edge worrying about other people. I know from Facebook posts that a lot of people are having a hard time managing, but I also think social media is doing a great job reminding people that none of us are alone in all of this. We’re all going through so many of the same emotions and uncertainties, but it really is so freaking encouraging how uplifting everyone is being. We know that one day this will be a distant memory, and maybe if you’re like me you won’t forget the way you felt during this time, but you will forget just how many episodes of shows from Netflix you watched, how many Sour Patch Kids you shoveled in your mouth while anxiously scrolling through the news, and how many days exactly you were quarantined. This will be a very interesting story to tell the next generation, and in the meantime we’ll all just keep pushing forward.
I woke up this morning in a sweat. My heart was racing as I jolted awake from some sort of nightmare. I immediately started thinking about things that make me nervous about the future, and how the heck I’m going to get through it all. My stomach dropped deep down into my abdomen as my heart leapt straight through my chest. Apparently you sometimes can’t even escape anxiety in your dreams.
Anxiety is a cousin of depression. They’re close in the sense they both can be based on fear and uncertainty, but they give two very different feelings. Depression is hollow and dark. It feels like a rainy day in a swamp, with fog as far as the eye can see. You know it’s a wide open space, but you can’t muster up the energy to move around freely. You are curled up in a ball, only vaguely noticing that there is a world around you. I think often with depression, the person in the middle of the fog can really only see a few feet around them and can’t tell that there is light and beauty outside the dark swamp. In fact, there are still beautiful flowers and little glimmers of light while you are there, but they can be difficult to see if you give up and stay curled in your little ball. Rays of light come in the form of good friends, puppies, working out, and helping others. There is always a reason to keep fighting, but everyone understands if you need to take a break for awhile. It is exhausting when you feel like you’re alone and don’t know how to pull yourself up off the ground.
Anxiety paints a different picture. Instead of being a more introverted feeling, anxiety is the craziest extrovert you’ve ever seen. It is wild and red, and hot to the touch. Anxiety makes you feel claustrophobic in your own body, and creates a strong desire to run away from yourself. With depression, you would rather be able to get back in to your own body and figure out how to find yourself again. Anxiety makes you want to forget everything there is about you and run away to create a new life. You want to turn your brain off to stop thinking about anything and everything and find a way to sleep again, but you can’t take a vacation from your thoughts. Both depression and anxiety can create a pit in your stomach, but they’ve often settled there for entirely different reasons.
I have tiptoed along the line of depression sometimes, but I think having some down days is part of the human experience, so it’s very different than it was being in the darkness I have only been in once before. Anxiety is a much more familiar feeling I let sneak into my heart. It starts by catching the door with its foot, then shoves its way in guns blazing. “You’re not good enough,” “You won’t be able to handle the future,” and, “You can’t do the thing” are all lies anxiety screams as loudly as it can. It makes up elaborate and unlikely stories of what your future is going to look like, but speaks them with confidence and as truth. It’s a lot easier said than done to choose not to believe the lies, as a simple, “just don’t worry about it,” or, “calm down” won’t ease an anxious person’s heart. It is possible to find peace, but takes a lot of swallowing your own pride, accepting help from others, and being gentle with yourself.
Anxiety and depression are both so prevalent in today’s world. I don’t know if the age of social media has caused a rise in mental health issues or we’re just more open about them now, but I’d say more people than not have had a taste of these feelings, even if they haven’t been officially diagnosed with anything. I think we underestimate how not-alone we are in the world and how similar our feelings are to one another.
Talking about anxiety makes me anxious. I still think people are quick to judge, label, and make assumptions about people they don’t know. Despite genuinely believing most people have a good headspace about talking about mental health, I know there is still ignorance and confusion in this space of the world. I know that therapy is still stigmatized, and that people don’t always love and support things they don’t understand. So many people, though, who you would never guess are fighting difficult battles by themselves. Sometimes the most beautiful, smiley rays of sunshine have a darkness that is clouding their heart, and I am so thankful that celebrities and people in the limelight who have platforms are speaking up about their struggles more. Emma Stone, Ryan Reynolds, Mindy Kaling, and Stephen Colbert are all people who live to make others laugh, but struggle with anxiety. Jim Carey, Owen Wilson, Ellen DeGeneres, and Sarah Silverman have all been very open about dealing with depression. It isn’t just comedians who struggle with mental health, though. There is an enormous list of people who range from athletes to astronauts who have been affected by depression or anxiety. Even Abraham Lincoln is thought to have had severe depression and anxiety; they just didn’t have a word for it then.
My purpose in writing this is because I think it’s so important that we realize we are never alone in our thoughts or feelings. People need to be taught from a young age that it’s okay for everything to not be okay sometimes. People should realize that we all have battles we’re fighting, that we can share our struggles with our loved ones, and most of all, to be kind to everyone we meet. I am not “Instafamous,” do not have a large group of followers, or a particularly captivating life to share about, but I want to open my heart to the people who do read this in hopes it makes someone feel less alone. I see you, and care about you. We need you here, and you are important. Please don’t ever forget that.
One of the hardest parts about having a chronic illness is feeling like I have less value because I am not contributing as much to the community as my peers. Before I got sick I was working toward pursuing a career in journalism. I took internships, worked part time at a newspaper, and was excited to continue my journey working at Seventeen magazine to hopefully impact young women in a positive way. I have always felt that words are one of the most powerful tools we have, and all of us have a wonderful opportunity to lift others up and make them feel less alone in this big world.
I always dread the question, “So, what do you do?” when I meet someone new. I hate explaining right off the bat, “Well, I got sick when I graduated from college, so I’m trying to get back on my feet and am working on getting my health in line.” Over five years later now I have made leaps and bounds in progress, but I still am figuring out how to manage what I’ve begun to accept as my new normal. Not only is my answer incredibly awkward, but I also just feel so lame not having a cool job or anything to show for my life. I worked so freaking hard before I got sick and have absolutely nothing to show for it anymore. The internship I had at a national news company isn’t relevant anymore, and my job at Seventeen wasn’t able to materialize into what it could have because I couldn’t even walk down the driveway to the mailbox when I first got sick. My illness didn’t just take my body away from me; it took away every sense of normalcy I had ever worked to create. I have nothing to be proud of, and feels like I can’t make an adequate contribution to society anymore. I have relied on others to take care of me, when all I have ever wanted to do was be able to take care of others.
If anyone who had a chronic illness told me they felt worthless, my heart would feel completely broken and I would try as hard as I possibly could to show them what an enormous, ugly lie that was. People shouldn’t feel like they don’t have worth in this world just because their body doesn’t work the way it’s supposed to. Our value does not reside in what we do — or don’t do — for a living, and people can still change lives when their bodies don’t work properly.
Whether or not you are a Christian, I think the Bible has a really beautiful sentiment about our worth as human beings. Psalm 139: 13-14 says, “For You [God] formed my inward parts; You knitted me together in my mother’s womb. I praise You, for I am fearfully and wonderfully made. Wonderful are Your works; my soul knows it very well.” This doesn’t say that we have value because of our job or what we do; it says we were born having value. We are made in God’s image, and He only creates beauty for the world. I think it’s very powerful knowing that even before ever doing anything in the world we have irreplaceable value. Just ask a mother of a newborn baby; she will say that her child means absolutely everything to her, and that is merely for existing, it isn’t anything he has done to make her feel this way.
I am a firm believer that everyone has a purpose in the world and can make a difference in a way that no one else could. Just because you are bedridden or need to be taken care of absolutely does not mean you don’t have value in the world. You have qualities to offer people that make you absolutely irreplaceable in their lives, so we need to stop telling ourselves the lie that we aren’t as valuable because we are different.
On the other hand, I understand the ache that is in your heart for the opportunities you have missed and feeling like some of life has passed you by. I don’t have the resume I would have had if I hadn’t gotten sick, and there are a lot of experiences I missed out on. It’s weird listening to my friends all talk about what they’re doing at work and how comfortable they are there. I still remember working at the magazine’s office like it was yesterday, but I also think that experience was so different because you’re the lowest on the totem pole. Dealing with an illness does teach you what is important in the world, though, and gives amazing perspective people often don’t have until much later on in life. It teaches you to hold on to all the amazing blessings you are given, because sometimes they can be fleeting, and to be thankful for the people closest to you. It teaches lessons of patience, hard work, and resilience. You learn what it’s like to be empathetic with people, rather than just offering sympathy, and you are given an opportunity to be a light for others who go through the exact same things you deal with on an every day basis. Chronic illness builds beautiful warriors who have such important lessons they need to share with the world.
I understand questioning your worth as much as anyone else with a chronic illness, and I am right there with you trying to find my own purpose. The words I wrote on this page make sense to my brain and I know that my life has incredible value, but my heart sometimes has a hard time making the connection. I feel lost in a big world that doesn’t understand me, and I am getting swallowed up in the lies I tell myself at night. Being sick has taught me I’m a fighter, though, and I’m not going to stop searching until I figure out what I’m here for. Deep down I know I have an important role in the world. I just might take a little longer to figure out what it is and that’s okay.
One of my best friends, Nicole, called me from Trader Joe’s the other day because she knows how much of a TJ’s fan I am. She wanted to know about a few of the items there, and after chatting for awhile I decided she would probably love to try my crispy pesto salmon. It is absolutely delicious and has the perfect little crunch over a creamy basil pesto sauce. Hungry yet?
Gluten-free Crispy Pesto Crusted Salmon
Okay, so here are the ingredients:
-Wild Caught Salmon (Boneless)
-Corn Flakes Crumbs
-Extra Virgin Olive Oil
Step 1: Preheat oven to 400°F. I almost always do 400 because it’s just easy to remember and 50° above or below 350° and 450°, so I figure it works no matter what.
Step 2: Chop up the sweet potatoes and broccoli florets and put them on a cookie sheet. I always do the veggies first so I can use the same cutting board and knife for the meat. It makes cleanup so much easier having fewer dishes! I also always use aluminum foil because it’s easier to clean off a pan this way.
Step 3: Drizzle EVOO, salt, and pepper on the vegetables. Feel free to get crazy and add spices like cinnamon or turmeric to them if you’d like! They’re known for regulating blood sugar and helping with inflammation.
Step 4: Pat the salmon dry, and cut it into however many servings you’d like. It doesn’t matter how large or small the fillet is.
Step 5: Put the salmon on the same pan as the veggies. You can drizzle a little EVOO on the pan before placing it there, and then cover in salt and pepper.
Step 6: Make the pesto sauce. Mix 4/5 parts pesto, 1/5 parts mayo. It doesn’t really matter how much mayonnaise you decide to use, but I always like the pesto to still have a very green color. It just looks a little more pale when you put the mayonnaise in. I should note that I hate mayo in everyday life, but it adds a good creaminess to this dish!
Step 7: Spread as much of the sauce as you’d like on top of the salmon filets. I usually make it a little thick so there’s more flavor, but if you want it super-crispy, be more conservative with the sauce. Then, sprinkle as much of the Corn Flakes as you’d like on top of the mixture on the salmon, and put it in the oven to cook.
Step 8: Bake until the salmon is ready (It depends on how well done you’d like it), and the vegetables begin to brown.
Step 9: While your food cooks, make the extra pesto sauce. Mix the same ratio of pesto and mayo, then add a few squeezes lemon juice, a pinch of salt, and a few pinches of pepper.
Once everything is done cooking, take it out of the oven and top with as much of the extra pesto sauce as you’d like. Robert likes it on his veggies too, but I only eat it on the salmon because I think that’s kind of weird and I like the vegetables just the way they are.
Post a comment if you decide to try this how you like it! I didn’t post a picture of the end result because 1) I was too hungry and took a few bites before I realized I probably should have gotten a pretty picture and 2) I don’t know how to make brown things look appetizing. The end of this reminded me of Thanksgiving dinner — it tastes amazing but no matter how hard you try to make your plate look good, it never in a million years will.
Today happens to be a very POTSie day. Luckily, dizzy spells are much fewer and further between, but I hate when they decide to come around with a vengeance. I have been doing a new exercise protocol lately that is supposed to make me feel worse before I feel better, but I am optimistic about how much it could help me in the long run.*
Anyway, I am currently working on a post about what my POTS timeline has looked like, and the improvements I’ve made, as well as the things that are still different in my life post getting sick. It’s been so interesting for me to look back at different things I wrote throughout the years, but is great to have something tangible to look at regarding my life.
Certain things are becoming more normal, and I am pulling off looking like a normal human being like a pro. I have looked pretty normal since getting sick with POTS, since it’s an invisible illness, but I used to have to ask for help much more often. Now I think people around me often forget completely that anything is wrong with me! I hope one day this will be true. Despite being sick for over five years now, I will never stop hoping to get back to complete normalcy. I have a million different things I’m working on for the blog, so today I wanted to just touch on a few things that have been different for me the past half-decade.
1. I can’t enjoy taking showers. Sometimes I hop in a hot shower just because I am in pain and want something to release the tension in my muscles, but for the most part they’re just exhausting. I usually choose between washing my hair or shaving if I’m going to stand the whole time, and have to alternate between the two or rest quite a bit longer after I’m done. Does anyone actually find showers enjoyable? I can’t remember anymore; now they’re just exhausting.
2. I’m not very extroverted anymore. Before I got POTS, I was super extroverted. I was always around people and had an enormous circle of friends. Mentally, I still want to be doing a million things, but my body isn’t up to that. I feel tired and drained from doing too much, so I don’t go out nearly as much as I used to. When I do, it’s usually dinner or dessert with just one or a few friends, rather than hanging out in a giant group. When I first got sick I really couldn’t do anything other than try to stay optimistic, rest, and work as hard as possible to take care of my body so I could hopefully get better one day. I think some of my friends who weren’t around might have felt like I was neglecting our friendship, but in reality I just couldn’t function. I have lost touch with people I sometimes still miss. Getting sick really does show you who is going to be around for the long haul, and makes you see who has unconditional love for your friendship.
3. I miss writing for hours on end. My favorite thing in the world has always been writing, even back in elementary school or high school when writing wasn’t supposed to be fun. I always said English was my favorite subject, even when other kids would say “lunch,” “recess,” or “gym.” I loved learning more about our language and how to write things that people would enjoy reading. It’s difficult for me to sit at a computer and type for hours without feeling it after, and then being in a lot of pain for days after. I am very slowly working on endurance, and hope to be writing more and more.
4. I miss being a helper. Before I got POTS I was independent and strong. I loved helping other people in any way I could, and was always there to do acts of service. There is nothing I hate more than having to swallow my pride and ask others for help. I’ve had to do that a lot the past few years, and it honestly doesn’t get much easier. I hate inconveniencing others, and I have a really hard time telling people I need something. I am still working on communicating better, but in the meantime I use my writing as an outlet.
5. I wish I could have my old dreams back. I dreamt of living in New York City as a magazine editor, and thought about how many lives I would change through my writing. I wanted to be able to support myself, pay my parents back for school, and afford my own life. I wanted to keep pushing myself and training for another half marathon, and I wanted to collect a million new skills from the new people I’d meet.
I have set new and more realistic goals, and am focusing on getting my body in shape so I can reach higher. Despite my life being much more complicated now, it’s also somehow become more simple. I realize how much I value the people who are in my life, and how important they are compared to everything else in the world. I’ve learned to appreciate the many blessings I do have, and how to live in the moment better. I still feel like I’m looking to find my purpose in the world, but I also trust God now more than ever to have better plans for me than I ever did for myself. I’m just trying to figure out what that is now.
*For any POTSies who are curious, I am doing the Levine protocol.
To say I’m not self-conscious about my chronic illness would be like saying I didn’t care what other people thought of me when I was in high school. Neither is true, but high school was a lot easier because at least everyone else felt the exact same way — and I knew it. Despite feeling self-conscious about the shape of my body or being worried about my future, I knew all of my classmates felt the same way I did. That brought a little glimmer of comfort even in all the confusion.
What’s frustrating about POTS now is that I feel so alone in it. I don’t have a close knit group of friends who are chronically ill, and frankly, that sounds exhausting. We would never be able to make plans with each other because one of us would always be feeling sick, and it would be a whole lot more difficult getting from point “A” to point “B” without having someone who could carry two water bottles or still think clearly even if it gets really hot outside. If I had known in college that one day I wouldn’t be able to carry a Smart Water bottle around for myself I would have been terrified for what my life was going to become.
I freaking hate having a chronic illness. I hate how it makes me feel, I hate that it’s so unpredictable, and perhaps most of all, I hate that I ever have to rely on other people to take care of me. I have always been super-independent, and despite being sick for almost five years now I am nowhere close to being used to all of this. Let that sink in. I have been sick for almost 1/5 of my life now, and I am still not even close to being used to it.
Every morning I wake up and want to be able to do everything for myself. I want to cook, then clean up the mess in one sitting. I want to be able to drive to meet my friends for lunch without worrying about where they want to go geographically because my arms might hurt terribly from driving too far. I want to have enough energy and strength to go to work, think straight with no interruptions from dizziness or brain fog, and get through an entire day without hurting and becoming stiff — then do it all over again five days in a row. I don’t understand why all of these things that feel like very basic human rights have been taken away from me.
I miss my independence so much I want to scream. I push myself to limits that I know are going to hurt me because I don’t feel like asking for help with little tasks. In my mind, people are going to get annoyed if I keep asking for help with so many seemingly easy things, and it’s not worth losing all of my relationships to feel decent. My brain understands that the people who love me are happy to take care of me, but my heart feels heavy and tight with frustration. I often feel like a burden — not because anyone has told me that I’m one, but because I can’t take care of myself the way I used to. I want to be the one to take care of my parents and repay them for taking care of me for more than just the 18 years they expected to. I want to be able to support myself financially, and I want to feel like I can give acts of service to my loved ones more than I am able to. I want my friends to understand the way that I feel and to know what it’s like to lose every sense of normalcy your body has grown accustomed to — but only for a day so that they can know what my every day is like and why I’m often so tired. I want people be able to feel my frustration so they can really understand how much small things impact me in my day-to-day.
I could write a book on all the things I miss that are really normal. I miss being able to make chocolate chip cookies from scratch all by myself, and I miss doing my own laundry (Seriously!). I miss going shopping without eventually feeling nauseous and dizzy. I think what I miss most is going places by myself. Whether it’s being able to drive into the city to walk around and explore by myself, or taking a mini road trip to see a friend, I wish I could drive myself around without having to rely on loved ones to chauffeur me around. I am 27 years old and want nothing more than to be able to sit in traffic by myself to see my best friend just one a state away whenever I want. I either have to wait until someone can drive me, or have her make the hour-and-a-half trip by herself to come and see me. Both the little and big things about being sick bother me, and I honestly don’t know if I’ll ever fully be used to being different this way. I hate asking people for help, and haven’t gotten a lot better at it over the years. POTS has made me realize that it isn’t always a person who can break your heart. There are other things in life that can take a little piece of it away, too.
My life hasn’t been normal for a twenty-something living in the suburbs of Washington, DC. Just 18 months after I could legally drink, I found myself stripped of all the independence I had spent time gathering while traveling across Europe for a summer program, working and taking care of myself at college, and moving to New York City even though I didn’t know anyone there. Instead of gathering more life experiences that would shape me into who I was becoming after school, I was thrown into learning the importance of appreciating even little moments in difficult days, and I was facing health issues that most people twice my age hadn’t even begun to deal with yet.
I would switch around a few of these. For example, I think taking a shower and shaving or washing my hair takes more than 2 spoons, but going shopping only takes 3, depending on the task (as long as I don’t have to push a cart or carry a lot). I have always been a really big fan of a nice, hot shower, but I honestly don’t even remember my pre-POTS showers. I don’t remember what it’s like turning the dial to the “H” without knowing that my heart is about to start racing like I’m running a marathon, and allotting some time to lie down after I’m done shampooing. I do remember the days I couldn’t wash my own hair, though. I remember first getting sick and not being able to stand in the shower because I would pass out. I remember sitting down in the bathtub in my pink paisley bikini so my mom could shampoo and condition my hair for me since the room was always spinning around me and I couldn’t stand by myself for more than a few minutes. In hindsight, the way my hair was washed is really similar to the way my dog, Macy, gets her hair washed now. We both just sat there and let someone else do a task we are less than thrilled about, but need to have done. I was 22 years old, had just graduated from college, and could not take care of even my most basic needs.
Despite making slow improvements with POTS, I still always look fine, so people usually cannot tell if I’m having a “good day” or “bad day” just by looking at me. Nobody else can see the way my vision blacks out whenever I stand up too quickly, or when my pain is acting up. Whenever I see someone pop right out of bed when they wake up on television I laugh to myself and think, “That’s so unrealistic!” then I quickly realize that it’s actually most people’s reality. Most people can jump right up from laying down to a standing position and not feel repercussions from their body. I don’t remember ever being able to do that, but logically I know that five years ago I would have been able to. Actually, come to think of it, it probably would have really freaked me out if I couldn’t pop right out of bed all of a sudden!
There are many things that I don’t remember from my pre-POTS life. I don’t remember what it’s like living with a “0” on the pain scale, I don’t remember being able to be low maintenance when traveling or going out with friends, and I don’t remember what it’s like feeling like you’re in the same boat with all your peers. College is so great because even though you are all doing such different things, you are all working toward some sort of career goal. I get sick of explaining what POTS is over and over again, and I hate the look of pity in someone’s eyes after I get done telling them about how even though I am still young, I ended up with a life-changing health condition at the very beginning of my twenties.
There are a lot of things I do remember so well from my old life, though. I remember going outside and finding out it was a beautiful day, so going for a long run. I remember deciding on a whim to train for a half marathon, and bumping up my mileage with ease. My brain remembers going to work and sitting at a computer all day long and all of the projects that I did, but I don’t really remember how it felt. I think about it now and wonder how I was able to do all of that without feeling stiff as a board and paying for it for the rest of the week. I have no idea how I ever survived without a foam roller or physical therapy. Did my body really once not hurt? Why didn’t I take advantage of that more?
I have been blessed, though. The crazy thing about POTS is there isn’t a lot of treatment that helps you get better, other than hard work in the gym (Which is done on the recumbent bike and with tiny hand weights), a good diet, and a great deal of luck. Getting sick has made me learn that there is no doubt in my mind that God does exist, and He has so much power and love to give. I still can’t believe how much more clearly I can think without all of the dizziness and brain fog, and I feel blessed to have good days mixed in with the bad. I actually think that most of the time I am probably on the higher end of the “happy scale” than a lot of twenty-somethings because I have learned to find the joy in the little things in life. I feel happy when I get to meet a new dog, I love being able to go outside for long and leisurely walks, and I really feel at peace every night when I look up at the stars. It’s really amazing to realize that even with so many planets and heavenly bodies so far away, my Creator still loves and cares about me. I always feel small when I think about how far away the stars are and how many other people there are in the world, but it really is amazing that God has a plan for each and every one of our intricately detailed lives.
I still don’t know why I got POTS or what my life is going to look like with it moving forward, but I am going to continue to share my journey and what I’ve learned with people, and I am going to keep working toward a more normal life. I’ve used a few spoons writing this and am getting dizzy because I really need a salty lunch, but I will be writing about The Spoon Theory again on my blog in the next week or so. I want you all to know what I use my spoons on, and how stealing a spoon from another day can be great because I am able to enjoy outings with friends, but it makes playing catch-up difficult the very next day. I, as well as all my other spoonie friends, just want to feel like everyone in life just gets it. That won’t happen unless we begin speaking out about our chronic illnesses, though, so I am going to continue being vocal about what life looks like on the inside for someone with a chronic illness.
Please take a minute to read this article by Christine Miserando about how she created The Spoon Theory. It is explained so darn well here, and I — along with every other person with a chronic illness — would give anything for people in my life to actually understand what it means to use spoons throughout the day.
Who all remembers when I had my “Chronically POTSitive” blog?
I initially created it for a class I was taking for my Master’s, but it was also a really fun way to start blogging and connecting to others with chronic illnesses. I have long given up writing on that — this blog is where my heart lies — but I have kept the mindset of being chronically positive. I’m not going to link any of that content because I wrote much of it lying dizzily on our living room couch so I’m a bit afraid of the errors that are surely scattered throughout my posts, but that is what initially made my heart feel open to the world and to share so much of my journey with others.
There are a few reasons I choose to be an optimist, and always try to look at the glass as being half full, rather than half empty. First, I’ve found that it’s actually a lot easier living as an optimist. Knowing that life is going to get better, even if it’s not necessarily there yet is such a powerful thing. I strongly believe in the power of positive thinking, and I think dreamers often get some of their wildest desires by putting them out into the world and fighting for what they want. Second, it is far less exhausting to be excited about the future than dreading it. Whether it’s with a job, dating, health, or anything that affects your quality of life, it’s always a lot easier getting through a bad day knowing that things will eventually take a turn for the better — even if it’s not that same week or year.
I got sick with POTS almost 5 years ago now, and I still remember my parents telling me every single day that I was going to get better and I would be able to walk around without fainting again, spend time out with friends, and live a beautifully joyful life. My dad told me that things would get better every single day when he drove me to the gym to do my 20 minutes on the recumbent bike after his long work day in the city. My mom hugged me while I cried on the bedroom floor because I was tired of not being able to stand on my own or go to the bathroom in the middle of the night without calling to wake someone up because I might pass out on my way there. We played “Would You Rather” late into the night when I couldn’t sleep because of my heart palpitations and chest pain. I looked forward to our little games despite the circumstances, and we always made it a point to laugh every day, even when I felt like the world was crashing and burning around me. I got sick with POTS overnight with no warning, but despite being bedridden and feeling sick 24/7, we still managed to find joy in my life.
Glasses are used to be filled and emptied. You end some days with a completely dry glass, but remembering that you can still fill it with something even better is so important to continue moving forward. Let’s say you have a full glass of lukewarm water that gets knocked over and empties completely on the floor. It sucks that you don’t have a drink anymore, but now you have room to fill it with something better — like chocolate milk or iced tea. Getting rid of the water made room for an upgrade. Sometimes life isn’t fair and doesn’t go the way you hope it will. Your heart gets broken by the wrong guy and it feels like the end of the world until you learn you’re better off without him. Then you meet the love of your life, and you realize that getting dumped was actually the best thing that ever happened to you, even though your heart hurt terribly at the time, because it allowed you to find the one person you never want to live without.
POTS was heartbreaking, scary, and life-changing. My arms hurt while I am writing this, and I wish I could sit at my computer and pour out my heart on paper all day long. I want to travel without feeling like I’m high-maintenance, I want to run again, and I want to chase the dreams I had in college still without having to change them because of my illness. If I hadn’t gotten sick with POTS, though, there’s no way I would have really met Robert. I would have moved to New York City and continued to write for a magazine, and I wouldn’t have been in the area before he went on his deployment. I would have missed out on so many great memories with my family, and I would never have seen just how many people love and care about me. My heart may not work like a normal one anymore, but it’s grown several sizes larger to hold all the love that is in my life. People are absolutely the most important thing to me, and getting to hold so many hearts close to mine means infinitely more to me than any job or amount of money ever could.
God works in mysterious ways, and although I am not sure why He hasn’t decided to give me back the body I used to have, I still have faith that I will have a joyful and fulfilling life. As my sweet friend Sophia often said, “The best is yet to come.”
After I wrote this post I happened to stumble upon this article by Forbes. Optimism is a life changer. Create it one step at a time and I promise you won’t be sorry.